“It struck me how tall and thin Catherine was. But from a couple of hours after we met we really clicked. We will probably be best friends for life because we get on so well.”

When Catherine left hospital this week the two “were almost in tears.”

“All the horrible things we have been through together, we will probably be friends for a long time,” the 31-year-old said.

When the two started chatting on the Gastroparesis and Intestinal Failure Trust’s Facebook page, Ruth had just been diagnosed.

After years of telling medics her suspicions they confirmed it in August.

“Doctors look down on YouTube and the net,” Ruth said.

“If you bring them print outs from the web they are not very open to that. But going on there helped me find out what was wrong so I could get diagnosed.

Ruth, from Cardiff, and Catherine, from Barry, also in South Wales, began messaging one another.

“When I found out there was someone local I started talking to her,” Ruth said.

“She was willing to share her medical information with someone she had never met before – I thought she was massively trusting.”

Catherine – diagnosed two years ago – knew who the best EDS experts were.

“She was able to advise me which doctors to see locally and in London who were familiar with the condition,” Ruth said.

EDS affects collagen in the body leaving sufferers feeling weak. It can cause joints to constantly dislocate and affects the gastric system – Ruth has to take in 16,000 calories a day because she constantly vomits.

It can leave skin stretchy and has left Ruth with marks on her eyes.

Catherine was “quite shocked” when she realised Ruth lived so near.

“I thought I would inbox her,” the mum-of-one said.

“She had been only just diagnosed and was confused, whereas I had been through all that.”

Speaking to someone else with EDS “helped quite a bit.”

“At the hospital it was like we had known each other for years. We were walking around together on our last night with Supergirl onesies on. We must have looked like drunks!”

Neither of them will get better, and unless a cure is found both Catherine and Ruth will always have tubes running into their hearts.

The pipes have to be perfectly clean as the slightest contamination could kill them.

Next week Catherine is going to London for “nerve scanning.”

“It’s quite scary,” she said. “I’ve got a little girl, a five year old daughter and I need to be alive.”

There is a 50-50 chance the youngster, named Aaliyah, could also have EDS.

When Catherine previously had a pipe inserted into her stomach she told the youngster it was “because she had a bad belly.”

“Since I have had the second one in she has not asked,” Catherine said.

“She just gets on with it. She’s happy I’m home.”

Despite EDS Ruth has managed to keep playing sax with her band Kookamunga.

“The only thing that has kept me going is the band because I get so much out of it,” she said.

“I play the baritone sax which is quite a heavy instrument.”

“It is worth the pain because of the social aspect as well,” Ruth said.

“When you’re stuck at home all the time your friendships do dwindle so I was determined to keep it going.”